Friday, July 2, 2010

Erin's new KAFOs

Erin recently got new braces for her legs, called KAFOs. This stands for Knee, Ankle, Foot Orthosis, and it is exactly that. These will replace the white soft braces (knee immobilizers) she has been wearing for the past year. We had to make sure she was ready for these before having them made, and as she has shown us, she was definitely ready. I want to share with all of you that when Erin was a baby, everyone outside of Kennedy Krieger said that Erin would NEVER be able to use braces such as these. In fact, they didn't think she would ever use an RGO, which she has long surpassed. We have learned many things on this journey of ours. One of them is that doctors and therapists should NEVER use the word "never". Another thing is that someone apparently forgot to inform Erin that she couldn't do these things, because she is definitely doing them! Our little girl has far more determination than most people we know.

Here are a few photos showing the process of getting measured, molded and fitted for new braces. It's a tedious process, but it was well worth it. Erin can't wait to go to KKI next so she can show them off to everyone. She picked out the patriotic design, and she actually loves to wear them! Yay!

Putting on the long socks to protect her legs when they cast them. You can tell she's thrilled!

One leg done, but that was after having to completely redo it.

Whew, both legs casted. Just had to wait for them to dry.

Taking off the casts and keeping them intact is not always an easy task. Time elapsed: 2 hours

After 8-10 weeks (I honestly lost track), the KAFO's were ready for a fitting. That appointment also took about 2 hours, because they had to make sure they were perfect.

And here she is, walking with her new braces. Can you see the pride and excitement?! And yes, this is the best picture I got, with my big shadow in it. (Sigh....)

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Erin Faith

Born as a conjoined twin and separated on June 19, 2004. Erin suffered spinal cord ischemia (stroke to her cord) sometime during the surgery, leaving her paralyzed from mid-chest down. It is a blessing that she survived the surgery and the stroke, and she is truly a gift from God.

Jade Hope

Jade is Erin's identical twin sister. While she outwardly seemed to have the most complications during the separation surgery, she deals with very few long term affects of being conjoined. You will likely find Jade running to get somewhere, and she keeps us laughing with the things she says. Jade is another gift from God!

Taylor Joy

Taylor is our sweet girl who truly is a Joy. When she was 3 years old, we found out that she had a tumor at the base of her spinal cord. It was exactly one year after her sisters' separation surgery. This spinal cord lipoma, while benign, was wrapped around her spinal cord, completely enmeshed with her nerve roots. The tumor was tethering her spinal cord, and Taylor was losing function in her bladder, bowel and right leg. During the first surgery, they were able to remove approximately 60% of the tumor. Her cord became retethered almost immediately because of scar tissue, and Taylor had her second surgery in September of 2007. We are fairly certain her cord is retethered again, but because the risk with each surgery on her spinal cord increases exponentially, Taylor's neurosurgeon wants to postpone another one as long as possible. We now weigh the risk of losing more function from her tethered cord with the risk of losing function from the surgery. There is a fine line. Despite all of this, Taylor maintains her positive attitude and has a very sunny disposition. We could not be more blessed!

About Me

Jade Hope and Erin Faith Buckles were born on Thursday, February 26, 2004. They are true miracles who have beaten the odds. Conjoined from mid-chest to naval, the girls shared a pericardium (sac around the heart), diaphragm and liver. Their hearts shared a small electrical connection and beat in synch. Erin's heart was 60% in Jade's chest. These beautiful babies were born to Marine Gunnery Sergeant (now Master Sergeant) Kevin Buckles and his wife Melissa. They were also welcomed into this world by their brother, Kevin Jr., and sister, Taylor Joy.
Erin and Jade were successfully separated on Saturday, June 19, 2004. They returned home on Friday, July 2, 2004, just 13 days after surgery. We later learned that Erin suffered a stroke to her spinal cord that left her paralyzed from mid-chest down. The damage occurred at the T3-T7 levels of her spinal cord. The injury is considered incomplete, so we have great hope for at least some recovery.
Taylor Joy was diagnosed with a tumor on her spinal cord in June of 2005, and she has undergone 2 surgeries since then to try to preserve her ability to walk.